Trial By Error: Julie Rehmeyer on the Heartbreaking Loss of Beth Mazur

By David Tuller, DrPH

Beth Mazur was a long-time ME advocate and a co-founder of #MEAction. ME-world was shocked to learn on Friday–two days ago–that she was gone, at the unconscionably young age of 47. At the time, she was visiting New Mexico and Julie Rehmeyer, another patient and advocate. Words often fail at times like this. But Julie has written a a lovely and heartbreaking account of her time with Beth, on both X (the awful platform formerly known as Twitter) and Facebook. With Julie’s permission, I have reposted the X thread below. (Check the X or Facebook versions for some great photos.)

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Julie’s X thread about Beth Mazur

I luckily shared the last couple of weeks of #BethMazur’s life with her. I want you to know: She felt loved when she died. She died because her ME was unbearable. There’s nothing more any of us could have done. Effective treatment is the only thing that could have saved her.

Fuck ME. 

Please don’t waste any energy on the what-ifs and I-should-haves that our brains so readily offer us. Put the fault where it lies: on this damnable disease. And let her memory be a blessing that fuels us all to support one another and find a cure. 

Also, please, please, if Beth’s death has added to your already huge load and you’re feeling vulnerable, reach out for support. Beth would work to make things better for you in any way she could, and although she’s gone, many wonderful people in this community are here to help. 

I’d like to share details of our time together so you know why I’m so confident that her last days were so wonderfully love-filled. Though we’ve known each other for 12 years, this was the first time she’d been to my home in Santa Fe, and she connected with this land too.

There were so many special moments. Mostly we were at my house, of course, but we were able to go to the plaza to see the Christmas lights and eat dinner out at the heated outdoor patio at the Plaza Cafe.

On the plaza, we encountered a rabbi lighting a giant menorah for Hanukkah. He gave Beth a small tin menorah and a golden dollar coin. Beth tried to unwrap it for the chocolate inside, only to discover it was a *real* coin, not a chocolate one!

Later, we gathered with Rivka Solomon, another powerhouse ME advocate and all-around amazing person, to celebrate Hanukkah and make latkes over Zoom.

Beth loves animals, and she quickly bonded with Lao, our cat, and Roo, our dog. Lao is a friendly cat, but he rarely sits on the laps of visitors. The first time he settled in her lap, her jaw dropped and her eyes lit up with joy. I wish I had a pic, but I’ll hold it in my heart.

Roo loved her too. She showered Beth with kisses, asked for belly rubs, snuggled with her on the couch.

I gave Beth head-and-neck massages. She hurt in the same places I do, so my fingers were guided missiles. I felt like I was channeling all the massages my husband John has given me, and it was a joy that I am well enough right now to pass that on. 

(I’m doing MUCH better these days, thank god. At another time, I’ll post about what’s happened and why I’ve improved. It’s just, you know, I’ve been afraid to jinx it!) 

We of course talked about health, and we came up with some possible treatment ideas that seemed promising to her. I suggested that venous outflow issues might be contributing to her ME, and she read about it and agreed that it fit her symptoms. She seemed excited to pursue it. 

She talked about what she’s been up to lately, and I was amazed at the endless stream of calls she had with various people she was supporting. I’m just now starting to see the enormous impact she had, on so many levels. 

She supported individual patients, often in desperate situations, spending hours and hours counseling them, finding them resources, solving practical problems. She helped create large-scale visions for advocacy. She used her technical skills to create digital infrastructure. 

Her understanding of the science was unsurpassed. She was constantly looking for new, promising treatments, and then she tried them herself — hundreds of them — and counseled others interested in them. She introduced Dr. David Kaufman to the idea of MCAS! 

Almost everything she did was behind the scenes, but everyone in the ME world has been profoundly touched by her work. She was an “elixir” for countless advocates, helping to brainstorm, think through problems, come up with visions for the future, and find energy to keep going. 

She never tooted her own horn — quite the opposite. It’s becoming clear that no one understood the full scope of her impact while she was alive. We all just had partial glimpses. 

Now I’m going to shift a bit, to talk about her challenges and what led her to end her life. I hope this will be more soothing than triggering, but you should assess whether this is the right moment for you to read about difficulties. 

The most amazing thing is that she did all this incredible work through profound cognitive dysfunction. It wasn’t just her perception: Neurocognitive testing showed massive deficits. She constantly felt concussed, like she had to push through a wall to speak and listen and think. 

We all saw the brilliance she still had, but it was a fraction of what it once was, and she deeply mourned that. Her cognitive dysfunction fed, or maybe caused, depression and anxiety. She tried every possible treatment for that too. 

The combination of cognitive dysfunction and depression caused her constant pain, depriving her of satisfaction for much of what she did and leaving her feeling like she didn’t fully exist. Her head never felt right for 14 years. 

She talked to me about that over the years, and four years ago, she was so worn out by it all that she was ready to end her life. She didn’t because of the pain she knew it would cause others. And she continued full-bore despite it all, trying treatments and working for change. 

What a gift she gave us by persisting for that time! So many people and projects she supported, and just so much of herself that she gave us all. Every moment she was here, functional or not, was a gift. We all wish it had been more, but are so grateful for what we got. 

Please remember that if you are struggling: Every moment you are here is a gift. If you can stay one more day, even one more hour, please do. 

A blessing of my time with Beth at the end was that she opened up more than usual, the walls she kept up softened by the love we shared. She was stressed about various things, and the depression was there, but ME was the root of it all. And no conversation could change that. 

The night before Beth died, she lay on the couch in front of the fire and put her head in my lap, and I stroked her hair. Lao curled up in the perfect cat spot formed by her belly and legs, with a heating pad below them. His eyes squeezed tight with pleasure. 

We talked about Beth’s stresses. If she knew she’d never get better, she said, she’d end her life — but she didn’t want to cause pain to those she loved. I had no sense that she was planning anything, and when I went to bed, she was calm and relaxed, still cuddling with Lao. 

But in the morning, Beth was dead. She’d clearly carefully planned it over a long time. She left a loving note and sent scheduled texts to many people, reassuring them and giving them love. Ridiculously, she apologized to me for not cleaning the casita, my little guest house. 

Her death was especially shocking because she was in the middle of so many projects, working with so many people. As long as she was here, she fought like hell for herself and all of us. Our treatment ideas brought her hope, but not enough to buoy her after hundreds of failures. 

Ultimately, Beth felt she had reached the end of what she could carry. But she continued to love this community and carried a deep belief in what we could accomplish together. 

I think she chose to die here with me because she knew I could handle the burden, and because the safety and peace and love she found here somehow made it possible, oddly enough. But she was committed to ending her life long before she came. 

The last days have of course been extremely hard, and I’m braced for a crash. But I’m OK. Some part of her spirit, I feel, will always be here with me. Her life partner Brian is visiting, and we’ll start creating an outdoor altar on my land for her. I feel steeped in love. 

I’m hugely grateful for everything she contributed, but that isn’t why I love her. I love her because she was her, just for her Beth-ness. I love her just as much for the moments she lay in bed, unable to function, as those times she was brilliantly leading the fight. 

I feel blessed by every moment she fought through the pain to stay, to share with us her kindness, her calm, her wisdom, her vision, her generosity. 

I love you, Beth.

18 thoughts on “Trial By Error: Julie Rehmeyer on the Heartbreaking Loss of Beth Mazur”

  1. I believe there might have been effective treatment for ME by now but for a crackpot/wicked ideology infecting the minds of good, conscientious doctors and affecting healthcare policy and research funding decisions for decades. The fight should have been on one front only, with everyone working together to beat ME into submission. Instead it seems that far too much time and energy has had to be spent fighting another sickness that should have been stamped out in the early 20th century, if not before. Fortunately, not all medics have succumbed to that sickness so I’m hopeful that things can and will change, but that change can’t come soon enough – too many people have suffered and too many have died.

  2. 💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜
    💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜
    💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜
    💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜💙💜

  3. Thank you: Julie for the writing out, at such a difficult time; David for the publishing for posterity. Most of all Beth, for the persistence. This has been a brutal blow at the end of a devastating year. But also strangely comforting to recognise it IS this bad, this relentless, for all of us. Who can blame her? Let us instead salute her for enduring so long, and giving so much despite it all. Thank you for everything Beth, even we who never met you felt your light shining from half a world away and appreciated all you suffered to build. Much love to all who loved you xxxxxxx

  4. Thank you Julie and David so much for sharing these details. It helps. I’m not on FB or Twitter and had searched for more answers; as personally the not know the how was overwhelming and my mind would race wondering how….Beth left us with a gift leaving her lasting days to Julie who then so graciously shared with our community and the world. Sometimes I’m terribly scared thinking Beth had a life partner, close friends, was able to travel if she couldn’t make it how can I ? Reading this gave me the comfort that it was her choice; her time; carefully planned and she is at peace. It always doesn’t work so easily. My uncle also planned his death and the ambulance came and he had said I thought it would have been faster…

    So of course I have personal experience that is where my mind goes. I can’t express enough the gratitude and brilliance Beth surely had; putting all these pieces together. This disease is so cruel; maybe amplified by the kindness of its patients. Wishing you all that knew Beth love, support and peace. And her life partner Brian as I know he struggles with ME also.

    Thinking of us all. This note was such a gift.

  5. The whole ecosystem and our internal biome is impacted by global warming induced climate change (“The protein composition is also affected by environmental influences such as medications and pollutants”).

    We can expect more of the same if our civilization keeps doing more of the same to us (The Advent Of The Sulfur Atom – 2).

  6. This makes me mad.

    Either you knew she wanted to do this, and it was all organised between you. Or she really was looking for someone to give her hope, to change her mind, which it seems you did not give her that needed hope. Its disappointing. I’ve spoken to several suicidal people, and said the things they needed to hear to help them make the choice to stay alive. One of those people was walking to a bridge to commit the act when I spoke to him on the phone. The other one has chronic health conditions as well.

    This is just a travesty. I would like to know if Beth tried LDN? If not….I really am totally in disbelief, as this is the best medication out there right now for cognitive issues related to ME.

  7. Thank you so much for posting this here. Like others above I am not on social media mostly because of limitations of ME. Finding this posted here has been really helpful. I appreciate deeply the candid and loving way this tribute to Beth is written and shared. I send my love to all of Beth’s close circle and to all others also struggling with this reality. Much gratitude 🙏🏼

  8. Six months rest from the inception, Ramsay insisted. But who gets that?

    If we could become extremely lazy sociopaths, we would have a better chance. ME punishes the virtuous, the fighters, the givers.

    She chose to be a giver.

    She should have (we all should have) the right to choose the time and manner of our death.

    Wishing things could have been different sometimes evolves into anger and lashing out. Try to be at peaces, anger helps no one. Or use it to good purpose –

    Love…

  9. Heather Dreske, above, wrote what I would have put together, if brain fog allowed. (Joy wrote the opposite — of what I would write and of her own name.) Julie Rehmeyer has the heart to be the most deep, dear, and wonderful friend a person could have, for Beth to have chosen Julie’s place and this time, after so many years of suffering. And Julie Rehmeyer has the heart to understand that the rest of us, including those with such ME/CFS that we couldn’t keep up and didn’t really know who Beth was, until now, these rest of us, including me, needed to read the details she wrote. She wrote them with heart, warmth, understanding, kindness, and love. I feel immensely hugged, easing the shock, and knowing Beth’s memory will, indeed, be for a blessing.

  10. Makes me so mad and so sad. I worked with Beth in 2021 and 2022 helping a severe pwME. I’m sorry to you Julie and Brian, and thank you David for posting this. Please get in touch if I can be of service.

  11. Beth, your timed release of information was very thoughtful. At first, we all just wanted to know, “how did she die”?? I get now, that was not important. The WHY was and is important. The “WHY” is that a horrible disease robbed her of her core. ME is the cause of her death. ME took so much away. ME was in the way. ME hurt her beautiful mind, body, but her spirit was not! Your trip to a sacred place was your way of protecting your loved ones from the immediate pain. You provided a buffer for them to accept the end. You were a brave woman. We honor you through the rest of our days. You loved us all with your huge heart and brilliant mind. Thank you fellow traveler. May your memory be of blessing.

  12. While I understand Joy’s frustrations I don’t agree with her conclusions. Yes, I’m mad, but I’m also very sad and very frustrated by the conclusions laid out by the majority here and elsewhere.

    Beth came to visit me in 2017 and she was doing very well overall, even carrying her heavy backpack around with her so she’d have her supplements, etc., with her if she needed them. But by 2019-2020, when we skyped, she (politely as always) expressed how much she wanted to quit MEAction. She was beyond burned out, and needed a break.

    But did she take one? I’m not sure. But if she did, it was brief. And that brings me to my disagreement with the majority of the comments here.

    Dear, sweet Beth, didn’t die solely from ME/CFS. She died because she took care of everyone else first — “spending hours and hours counseling them, finding them resources”, etc. — before taking care of herself.

    Even after getting so bad four years ago she was ready to end it all, what did she do? As Julie states above, “she continued full-bore despite it all, trying treatments and working for change”.

    And why did she feel she had to do this? Did she not feel worthy unless she was proving that she was a good person? Did she feel guilty if she quit or took a leave of absence? Think of the pressure she put on herself to live up to everyone else’s expectations. How can ANYONE heal under those stressful circumstances?

    I also take issue with Julie’s implied suggestion that there are no ‘effective treatments’. That’s just not true.

    It reminds me of the odd factions found on ME/CFS forums like Phoenix Rising and others: One half seems to be waiting for the government to fund studies so they can ‘The Cure’, while the other half is improving and even recovering by using specific nutrients to address issues like mitochondrial function, methylation and gut health. There ARE treatments, there are ways to get better, and they’ve been out there for at least 15-20 years.

    All this is to say, we don’t look at the big picture enough.

    It’s not about this virus, or that bug, or this mold or whatever. It’s about what ELSE was happening in one’s life when they became ill – maybe decades, maybe months or days — and even after or while one is sick. As even Mr. Tuller has admitted before, there’s indeed a strong connection between chronic illnesses of all kinds, and life’s traumas and stressors.

    At least Beth is finally at peace. I’m so sorry for Beth, her husband and family, and send my deepest condolences.

  13. Sorry — the 2nd to the last paragraph in my comment above should read:

    It’s not about this virus, or that bug, or this mold or whatever. It’s about what ELSE was happening in one’s life when they became ill – or maybe even decades, years or months before — and then even after or while one is sick. As even Mr. Tuller has admitted before, there’s indeed a strong connection between chronic illnesses of all kinds, and life’s traumas and stressors. That doesn’t mean “it’s all in our heads”. It means traumas and stressors affect health and need to be addressed.

    Thank you.

  14. Thank you, David, for reposting and to Julie for sharing these last special moments. I’m so glad Beth had those last days of acceptance and love from Julie and the pets.

  15. Julie, that must’ve been very hard for you to discover Beth’s body. Yes, she must’ve had a great deal of respect for you to know you could handle it. She was an intelligent, thoughtful and mature woman, and I agree that she must have thought her end through carefully.

    I also agree that the real culprit here is ME, including the lack of funding, miseducation of medical professionals, and lack of research into treatments. If it weren’t for this dreadful, debilitating disease, Beth would not have needed to end the suffering.

    Julie, I’m glad that you made her final days happy ones. I’m grateful for all that both of you have done for our community (and you too David). Beth is where she wanted to be: at peace.

  16. This is my 50th year of ME/CFS, hyperadrenegic POTS, EDS, MCAS, small fiber neuropathy, sjorgen’s syndrome, pulmonary hypertension, etc. In 1992, I made three special friends who were in the same boat as I was. Two died of cancer, which was clearly related to their immune damage and the other couldn’t go on and took her life. I am the only one left.

    I’m quite grateful to be here, sad that I have lived my life as a shadow of my original self, but fortunate that I was given so many talents, cognitive gifts and quality upbringing so that I could keep keeping on, due to those extra gifts.

    Shout out to Julie and David for posting this. Much love to Julie and Beth for their braveness. That’s often the hardest part.

  17. I didn’t know NM had advocates. I’m very severe in NM, fired by PCP 2 months ago, didn’t learn until last week. While in ER for suicide attempt (due to Very Severe, life not tolerable), denied wheelchair, access to toilet, feminine hygiene products, developed bad rash from laying in heavy menstrual blood for 24 hours. I can’t get basic medical care or even an albuterol refill. I post this everywhere reddit YouTube I can’t talk on phone and no one cares enough to answer. I look at this through severe migraine, can’t think, and wonder why my life has so little value. We have lost our humanity.

  18. Litsa Dremousis

    Julie, thanks so much for writing such an eloquent tribute to Beth at such a difficult time. The entire community has been impacted by Beth’s death. Thinking of you and, of course, thinking of Brian.

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